Anyone move to stage IV while still on first year of herceptin?

Slainte

I know I am probably just paranoid, but I am worried about some hip and back pain. I started herceptin Dec 2010. I have had severe joint pain while on herceptin ( pretty much every joint in my body from my ankles to my shoulders). My left hip has bothered me right from the start, and is now much worse. My lower back started to hurt about three weeks ago, this is a new area of pain. I have an oncology appointment July 22. What I was wondering, is if anyone has moved to stage IV during the first year of heceptin.



Christine

lassman

Christine,

I was just one year out of my original diagnosis and on my 6th dose of Herceptin when i was diagnosed with brain mets. So, yes it can happen.

However, aches and pains can come with the treatment and even with Herceptin since it affects us all so differently. You need to mention it to your onc and get it checked. If it is mets they can start to deal with it, if not, at least you will have peace of mind.

Best of luck. Hope it turns out to be nothing. Will be thinking of you.

Louise

Slainte

Thanks for posting Louise, I will talk to my Onc on July 22. I just feel a bit crazy when I ask about all my aches and pains. I haven't seen my Onc much through my treatments so I don't have much of a relationship with her. We will see how it goes.



Christine

lassman

Hi Christine,

Let me know how it goes on the 22nd. Will be thinking of you. You are not crazy for asking. This BC business is scary stuff. I think we have a right to feel nervous!

Best

Louise 

Nevo84

Dear Christine

My mom had a lower back pain which made her and us so worried about a month age. It was like muscle spasm in her left side and she couldn't even walk. She always has waist pain and spine problem. When she visited  her oncologist he told her that it is normal in her case. After that all the pain has gone and she hasn't suffer from it again. So finger crossed be positive and everything will be ok.

Slainte

My logical side believes my pain is just more side effects from the herceptin. My illogical side thinks I have certainly moved to stage IV lol. I am one of the lucky few (sarcasm intended) who has considerable side effects from herceptin. I told my husband today, that the pain I have now is worse than I ever had in "regular" chemo. I have been in pain for so long, I can't even remember what I used to feel like. I will talk to my Onc , but I expect her to say the pains are SE ( unless of course she says it is all in my mind lol) and will probably not order any tests.



Thanks for all your support.



Christine



PS. I am 45 years old with no health concerns before BC so I find it a bit frustrating when I have trouble walking down a flight of stairs

Sassa

Some HER2+ cancers are resistant to herceptin.  We had a member (Jersey Maria) that was diagnosed and having similar chemo (4AC) and herceptin about the  same time I was.

Maria was one of those unfortunate herceptin resistant HER2+ patients.  She recurerd within 6 months of starting herceptin  and progressed very rapidly to being terminal.

sunflower71

Slainte,

I have had significant joint pain since chemo and during herceptin.  I just turned 40 and am definitely not ready to be in this much pain. It has gotten worse the more herceptins I get in.  My onco was concerned and sent me for a PET, it was clear with the exception of the thyroid. I completely understand when you talk about your mind going to mets.  It is our biggest fear. I was grateful for the scan and now sleep a little better knowing it was not bone mets.

 I then followed up with a rheumatologist who is running all sorts of bloodwork.  You know what I think?  Its the herceptin.  My onco said some people (although she claims very rare) have an autoimmune response to the herceptin which cause pain.  In the meantime I am now taking a great non-narcotic drug that is helping.  Don't live with the pain!

Slainte

Sunflower,



I see my Onc on Friday. I think my pain is herceptin related but it appears that only a very small number have severity of joint issues I have. I guess I will see if she orders any test to rule out bone mets. I would like to know for sure that mets isn't the problem. I am taking Voltaren , a NSAID twice daily right now. It keeps the pain tolerable but by no means makes it go away completely. If I know it is just the herceptin then I will just set my new goal for December. Hope you are doing well.



Christine

kathleen1966

I have more pains than I used to have and I am on Herceptin until September.  I have three treatments left.  It is not horrible pain, just more than I had before. My lower back usually hurts more after my herceptin than gets better as the weeks progress.  I also have pain in my right ankle, and my knees make all sorts of noise as I climb the steps. Its good to know that others have had this while on Herceptin. 

CarylC

I'm waiting for a biopsy to be done on a lymph node in my abdomen that appears "highly probable" for metastatic cancer according to my ct scan which was done after an MRI picked up a shadow.  The MRI was done because of horrible back aches which turned out to just be back problems.  I've been doing Herceptin weekly since April and only have 1 chemo treatment left.  When I asked my onc what the chances were that it was mets vs nothing he said "we never underestimate HER2 +++."

He didn't give me any stats but I guess he made it clear it was not something he was used to seeing.  Here's to hoping we are both still IIb! 

Slainte

Saw my Onc on Friday. She has ordered a bone scan and head/chest/abdomen CT scan to rule out any metastaic spread of my cancer. My pain is still most likely from the herceptin, but I am gale yo have the tests to rule out mets. Should have thhrm done with in the next few weeks.



Christine

HollyinMich

Slainte, I just saw your thread and I have to say that I have been having very similar issues.  I'm only 34 and I echo your frustration with the pain.  My lower back and hips have been killing me.  It takes me a minute or two to stand up straight from sitting and moving about doesn't help to lessen the pain as it does for others.  I had a bone scan last Wednesday and got the resuls back Friday.  No sign of metastaic disease but it did show mild to moderate bone degeneration in all of my joints.  So off I go to see my primary doc on Tuesday to see what we can do to manage the pain.  So glad it's not mets, but still not happy with the pain.  Chemo, the gift that just keeps on giving, lol.

Wishing you all the best and hoping for clear scans for you! 

Slainte

HollyinMich,



Do they think your joint degeneration is from the herceptin? Are you finished herceptin yet? I would consider stopping herceptin (I have already had 11 treatments) if I thought it was causing irreversible joint issues.



Christine

HollyinMich

I have 4 more txs of Herceptin left.  My oncologist swears that it's not the Herceptin.  To be honest I don't think it's the Herceptin alone either.  I think it's a combination of all the treatments I've had.  I found this great article awhile back that was very interesting in Cure magazine while waiting in my Oncolgist's office.  Here's a link to it http://www.curetoday.com/index.cfm/fuseaction/article.show/id/2/article_id/1587.  Really intersting stuff.

Edited to add:  I plan on bringing this article with me to the doc tomorrow. 

Mouse6

Slainte,

I sympathize my dear. I am waiting to be sent for a bone scan because of pain in my hip that has lasted about 4 months. I get frustrated because I wish I didn't have to worry. I feel like I don't want to run to the doctor for everything, but I also don't want to ignore things and then find out later I should have been more proactive. What a challenge we have. This disease has taken away our precious sense of false security that we love so much.

Slainte

I have my bone scan and CT on tue and wed next week. I agree about running to the doctor about everything. I told my Onc I didn't want to be paranoid and have extra tests if they aren't warranted. She said " I wouldn't order them if it wasn't warranted". Then I felt bad because I need them! Lol. Kind of wished she would have said, " oh don't worry, it's nothing.". Hahaha. Go figure )



Christine

CoolBreeze

My onc has said he's never seen anybody recur while on herceptin.

Clearly though, it happens.

I recurred five months after I finished herceptin.  I began having back pain in November, finished herceptin 12/2, told the doc.  He ordered a bone scan and an abdominal CT, and it all came out clean.  Five months later, I started bloating and I told the doctor.  He ordered another scan, and this time, it showed liver mets.  At least we know how fast it came back.  

Liver mets didn't explain the bloating or pain either (it wasn't acites), so that remains undiagnosed.  Probably just getting fat post-tamoxifen!  The mets was considered an incidental finding but I'm grateful to this back pain because we'd have never known.  I'm asymptomatic regarding the liver.

Good luck, I think pain is part of the deal post-cancer, at least for a while. 

Mouse6

I'm even more nervous now because my family doc called yesterday and said she wants to see me about my most recent blood work. That combined with this pain in my hip...someone pull me out of the dark hole I'm about to dig and crawl into. I'm so anxious. I feel like I've been waiting for the other shoe to drop, but I'm only 5 months out from finishing herceptin. I know I should stay positive, but oh it's so hard.

CoolBreeze

Does your family doctor do tumor markers?  What kind of blood work do they do?  Maybe your still anemic or something.

Mouse6

Hey cool. No tumour marker tests. Bloodwork was in prep for an infusion that i get every 6 months. Docs office called today to ask me to get bloodwork done again. she said my liver enzymes are elevated. I also have a bone scan scheduled for tues next week. so nervous right now.

kathleen1966

Just had Herceptin today, came home and am having some significant back and hip pain......not there before I got the infusion. It MUST be the Herceptin....it is listed as a side effect. Not horrible pain, but there....

Mouse6

I didn't get any pain with herceptin, but a good friend of mine reported headaches with every tx.

Slainte

Hi,



Had my bone scan and CT scan last week. The results were all good. I don't have the brain CT back yet but I think that one is ok. My bone scan showed some mild bone remodeling of my left hip consistent with bursitis but other wise everything is good for now.



Christine

LouLou40

Hi Slainte,

Are you taking an AI as well as Herceptin?

I developed quite bad hip pain when I was taking Arimidex while till on Herceptin and my Onc said I had bursitis which was a SE of the AI. My Onc prescribed NSAIDs which helped a bit, but the pain continued, a few months later I had to stop taking the Arimidex (after a year on it) because I developed Osteoporosis in the hips and I found my hip pain resolved within a months of stopping it.

scuttlers

Yes, moved to stage IV while on Herceptin (in 10th month). Told that I'll be on Herceptin for the rest of my life. glad that I'm not having other side effects. (other than tired, diarrhea, fuzzy brain, and really bad muscle cramps.)

Mouse6

Christine - so glad to hear your scans were clean. That's fantastic!!! Congrats.

Slainte

I am on herceptin only and have been since Feb. My joint pain has gotten progressively worse over the past 5 months. I am quite convinced it is due to the herceptin. I sure hope it all goes away when I finish herceptin in Dec!



Christine

shadow2356

I had terrible joint pain while I was on herceptin. My hips were the worst but really it was in all my joints. My doctor kept telling me it was not the herceptin. I had bone scans and they were clear (!). I finished the herceptin in Nov and the bone pain gradually went away. By the six month mark it was completely gone. I don't know why so many doctors say it is not the herceptin when so many women have this side effect.

Slainte

Shadow ,



It is comforting to know that your pain went away eventually. Lately I find myself thinking, "what if this snit a herceptin side effect, what if it doesn't go away?"



Christine